Objective: The current study aimed to examine the psychological distress of family caregivers of patients with psychosis following a stress-coping model as well as a self-regulation model. Methods: A cross-sectional correlational study was conducted in a psychiatric out-patient clinic of a local hospital. 26 caregivers were recruited. Associations among their psychological distress, appraisal of caregiving experience, illness perception, coping style and care burden were explored. Results: Psychological distress was found to be significantly correlated to negative appraisal of caregiving, perceived consequences on patient, perceived consequences on relative, perceived control by relative and care burden. Preliminary analysis showed that a combination of four factors, including negative appraisal of caregiving, perceived consequences on relative, perceived control by relative and care burden, significantly predicted psychological distress (〖R 〗^2= 0.36, F(4,21) = 2.97, p < 0.05). Among the predictors, negative appraisal of caregiving was the single strongest predictor of distress (〖R 〗^2 = 0.28, F(1,24) = 9.18, p < 0.01). Conclusion: The psychological wellbeing of family caregivers were influenced by both factors suggested by the stress-coping model and the self-regulation model. Findings from the present study provided preliminary evidence for developing caregiver-centered intervention that focused on appraisal of caregiving experience and illness perception in order to reduce the distress of caregivers. Further studies would be recommended to explore and differentiate the impact of appraisal of caregiving, coping style and illness perception on psychological distress in the caregiving experience for patients with psychosis. / published_or_final_version / Psychological Medicine / Master / Master of Psychological Medicine

The purpose of the present study was to compare 42 community-dwelling spouse and child Alzheimer's Disease caregivers with 38 community-dwelling potential caregivers on salience of illness symptoms, and accuracy of judging symptoms of illnesses.

Autism is a life-long neurological disease that manifests differently in every autistic person. Children with autism have difficulties with four developmental areas, namely: language and communication, social interaction, imagination, and sensory issues. These behaviours make it extremely difficult to care for, or teach, autistic children as these children often present with behaviours that are psychologically, cognitively and physically challenging. As there is only one government subsidised school with the expertise and support structures to teach and care for autistic children in the Eastern Cape, parents often have no option, but to place such children in residential care in order for the children to receive the expert teaching they need. As a result, hostel housemothers are often placed in parental roles as they provide much of the parenting on a daily basis. Many of these caregivers have their own families that also need support and care. This may place additional burdens on these employees that could lead to a variety of psychological and physical conditions, depending on their resilience, and ability to handle frequent stressful situations. It is for this reason that this study is imperative, as it will uncover the stressors experienced by the hostel housemothers who play such a pivotal role in the lives of autistic children. The results of the study will serve to inform possible future interventions. This is a qualitative study. Participants were obtained through purposive sampling, and data was analysed through a thematic analysis approach. The Salutogenesis theory of Antonovsky was used, which particularly looks at stressors, tension, breakdown, and Salutogenesis. The study has generated, in the researcher, an understanding of how hostel housemothers cope with the stressors of caring for autistic children, and intends to do the same for readers.

Grounded in the life course perspective, this study examined stress among long-distance caregivers, asking whether stress levels vary by family relation to the care recipient or by geographic distance. A growing older adult population forecasts a corresponding need for caregivers. Although family members are the primary source of care for older adults, our population has seen high rates of mobility among both adult parents and their children, increasing the geographic distance between them. Given that the number of children per family has decreased, geographically distant children may be the only available family members to help frail, aging parents. Older adults without children available may have to rely on other family members, some of whom also live at a distance, in times of need. Caregivers who live at greater distances may have more difficulties providing care to their loved ones than those who live closer, and they may face greater stress than caregivers who live nearby. Further, because the child-parent relationship reflects the strongest kin obligation, child caregivers may have a higher likelihood of caregiver stress than nonchild caregivers. Research questions were addressed using data from a nationally representative survey of long-distance caregivers conducted in the Fall of 1996 by the National Council on Aging (NCOA) in collaboration with Matthew Greenwald and Associates of Washington, DC. Child caregivers (n=98), those whose care recipients are parents or step parents, were compared to nonchild caregivers (n=74), those whose care recipients are caring for grandparents, siblings, other relatives, or friends. Caregivers in both groups provided comparable care, such as helping with decision making, advice and information, making needed arrangements, and providing emotional support. Hierarchical multiple regression was used to assess the amount of variance explained by relation type and geographic distance after controlling for caregiver income, caregiving intensity, gender, care duration, and care recipient health. Bivariate relations suggested that caregivers with higher income give significantly less intense care, and that the passage of time may lessen stress for caregivers. Results of the multivariate analysis showed that relation to care recipient was a significant predictor of caregiver stress, with adult children showing higher levels of stress. Caregiver stress, however, was not greater for caregivers who lived farther away from care receivers. Using nationally representative data, the study documented the stress of long-distance caregivers, particularly adult children, thus suggesting the need for additional research and possibly programs to alleviate that stress. / Graduation date: 2003

The purpose of this research was to examine what the caregivers of raped children experience in the aftermath of child rape disclosure. Nineteen caregivers were drawn from a Treatment Centre, for child rape victims, using purposive sampling. Information was gathered from them by means of focused in-depth interviews that were conducted by a qualified psychologist and the data collected from these interviews were analysed using thematic analysis. According to the findings of this study, caregivers reacted emotionally, physically, and psychologically to rape discovery. What was feared by most caregivers was that their children might have contracted HIV during the rape incident. Most caregivers also complained of the service rendered by the police and considered it to be the worst as compared to that provided by medical staff. When it comes to coping strategies, most caregivers seemed to have been assisted by the Treatment Centre in dealing with rape disclosure. This suggests a need for the development of more such Treatment Centres which are readily accessible by the public. / Thesis (M.A.)-University of KwaZulu-Natal, Durban, 2008.

With three homogenous caregiver groups (i.e., Alzheimer's caregivers, grandparents raising grandchildren, parents), caregiving styles were explored to determine their reliability and validity, their unique role in predicting caregiver outcomes, and their differences between groups of caregivers. A conceptual framework was adapted to determine the impact of contextual variables, caregiving styles, caregiver appraisal, and mediating variables on caregiving outcomes. A more concise version of the Caregiving Style Scale (CSS) was developed with 49 items yielding an internal consistency coefficient of .74. As expected, three caregiving styles emerged and were positively related to the parallel parenting styles. Across the caregiver samples, there were positive relationships among caregiving style dimensions within the same caregiving style, while those from opposing caregiving styles tended to have negative relationships indicating good convergent and discriminant validity. Authoritative caregiving style dimensions were generally associated with healthier functioning, while authoritarian and permissive caregiving style dimensions were correlated with less healthy functioning. Caregiving style dimensions were among the predictors of several outcome measures, highlighting the importance of their placement in the conceptual framework for caregiver stress and coping. Generally, an unexpected finding was that authoritative caregiving style dimensions tended to predict less adaptive caregiving outcomes, particularly for parents and grandparents, while the impact upon caregiver well-being by authoritarian caregiving style dimensions varied throughout the caregiver groups. Results further indicated that different groups of caregivers tend to take on different caregiving styles, with grandparents and parents tending to differ significantly from Alzheimer's caregivers in their approaches to caregiving.

研究背景 / 雖然靜觀減壓療法(MBSR)近來備受關注， 但在香港中國人群中尚缺乏可靠量表測定其靜觀能力，而且也罕有研究評估MBSR在家庭護理者心理健康方面的作用。 / 研究目的 / 本研究有兩個目的：第一，在香港社區人群和臨床患者中驗證中文版《五面靜觀能力問卷》（FFMQ-C），並設計簡潔版中文問卷 （FFMQ-SF）；第二，使用隨機對照研究（RCT）評估MBSR在緩解家庭護理者抑鬱症狀等方面的療效。 / 對象與方法 / 在問卷驗證研究中，招募了230名社區成人和156名廣泛性焦慮患者（GAD）。重測信度和內部一致性信度用於檢驗可信度。驗證性因素分析（CFA）則用於檢驗結構效度。 / 在RCT中，141位符合納入和排除條件的家庭護理者被隨機分配至靜觀減壓組和對照組（提供健康教育自學材料）。抑鬱症狀是本研究的主要指標，使用流行病學研究中心憂鬱量表（CESD）測定。得分在16以上的被定為疑是抑鬱症，CESD下降50%則被定為臨床好轉。次要研究結果包括焦慮，自我效能，靜觀能力和生活品質等。參與者需在研究開始之前，幹預結束之時和三個月隨訪之後自行填寫問卷。數據分析採用意向性研究方法。 / 研究結果 / FFMQ-C的重測信度為0.88，內部一致性在社區人群為0.83，在GAD患者為0.80。CFA證實了問卷的五因數結構 （NNFI 0.94, CFI 0.95, RMSEA 0.076 (0.063-0.086)）。FFMQ-SF包括20個條目，具有良好的效度和信度。 / 在RCT中，靜觀減壓組 （n=70）的退出率明顯低於對照組 （n=71）（12.9% vs 26.8%, p= .039）。靜觀減壓組CESD的下降程度在幹預結束之時（-6.72 ± 6.38 vs -2.85 ± 4.82, p= .001），和三個月隨訪之後（-4.70 ± 6.32 vs -1.39 ± 8.52, p=.001）都比對照組更加顯著。靜觀減壓組較對照組有更多人獲得臨床好轉的，無論在幹預結束之時（35.3% vs 4.7%, OR (2.29, 54.51)），還是在三個月隨訪之後（23.5% vs 7.0%, OR (1.00, 16.90)）。靜觀減壓組在焦慮症狀緩解、自我效能提高和靜觀能力增加等方面均較對照組有更顯著的改變。 / 研究結論 / FFMQ-C和FFMQ-SF都能可靠並準確的檢測香港中國人群的靜觀能力。 / MBSR能有效減少護理者的焦慮、抑鬱症狀，提高自我效能和靜觀能力，在香港社區中有良好的可行性和接受性。 / Introduction / Mindfulness-based stress reduction (MBSR) program has been receiving increasing attention in recent years. However, no questionnaires were validated to measure “mindfulness in Hong Kong Chinese adults. In addition, few studies have been conducted to examine the effectiveness of MBSR on mental wellbeing of family caregivers. / Objectives / The first part of this thesis aimed to validate the Chinese version of Five Facet Mindfulness Questionnaire (FFMQ-C) in Hong Kong and to develop a short form scale (FFMQ-SF). The second part of the thesis aimed to evaluate the effectiveness of MBSR in reducing depressive symptoms among family caregivers in Hong Kong Chinese adults. / Subjects and Methods / In the first part of the thesis, 230 community adults and 156 patients with clinical diagnosis of generalized anxiety disorder (GAD) were recruited. Both test-retest and internal consistency reliability were used to examine the reliability of FFMQ-C, while confirmatory factor analyses (CFA) were used to examine the structure validity of FFMQ-C. / In the second part of the thesis, 141 caregivers, who met the inclusion/exclusion criteria, were randomly assigned to either the 8-week MBSR group or the control group (self-learning booklets on mental health and stress management). The Center for Epidemiologic Studies Depression Scale (CESD) was used to measure the depressive symptoms as the primary outcome. A score of CESD above 16 was used to identify the clinically significant depression and a 50% or more reduction in CESD was regarded as clinical improvement. The secondary outcomes included anxiety, self-efficacy, mindfulness and quality of life and so on. All the outcome measures were self-administrated at baseline, post-intervention and 3-month follow-up. Intention-to-treat analyses were used to test the group effects of MBSR on outcome measures. / Results / The test-retest reliability of FFMQ-C was 0.88, and Cronbach's alpha was 0.83 in the community sample and 0.80 in the GAD sample. CFA showed adequate model fit for correlated five-factor structure (NNFI 0.94, CFI 0.95, RMSEA 0.076 (0.063-0.086)). A 20-item FFMQ-SF was developed and showed sufficient reliability, validity and psychometric property. / In the second part of the thesis, the MBSR group (n=70) showed significantly lower attrition rate than the control group (n=71) (12.9% vs 26.8%, p= .039). Participants in the MBSR group reported significantly greater reduction in CESD compared to the controls immediately post-intervention (-6.72 ± 6.38 vs -2.85 ± 4.82, p= .001) and at 3 months post-intervention (-4.70 ± 6.32 vs -1.39 ± 8.52, p=.001). MBSR group had a significantly larger proportion of participants with clinical improvement than the control group immediately post-intervention (35.3% vs 4.7%, OR (2.29, 54.51)) and at 3 months post-intervention (23.5% vs 7.0%, OR (1.00, 16.90)). Significant group effects of MBSR were also shown on the reduction of anxiety symptoms, the improvement in self-efficacy, and the increase in mindfulness. / Conclusions / The FFMQ-C and FFMQ-SF are reliable and valid instruments to measure mindfulness in Hong Kong Chinese adults. / MBSR is a feasible and acceptable program to effectively reduce psychological symptoms, and to improve mindfulness and self-efficacy among adult caregivers in Hong Kong Chinese. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Detailed summary in vernacular field only. / Hou, Jing. / Thesis (Ph.D.)--Chinese University of Hong Kong, 2012. / Includes bibliographical references (leaves 102-122). / Electronic reproduction. Hong Kong : Chinese University of Hong Kong, [2012] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Abstract also in Chinese. / Abstract (English) --- p.i / Abstract (Chinese) --- p.iii / Acknowledgements --- p.v / List of Contents --- p.vii / List of Tables --- p.xi / List of Figures --- p.xiii / Chapter Chapter 1 --- Introduction --- p.1 / Chapter 1.1. --- Background of the study --- p.1 / Chapter 1.1.1. --- Validation of the Chinese Version of the Five Facet Mindfulness Questionnaire for Adults in Hong Kong --- p.1 / Chapter 1.1.2. --- Evaluation of the effectiveness of MBSR on mental health among caregivers in Hong Kong --- p.2 / Chapter 1.2. --- Objectives --- p.4 / Chapter 1.3. --- The structure of the thesis --- p.5 / Chapter Chapter 2 --- Literature review on the impact of caregiving and the interventions for caregivers --- p.7 / Chapter 2.1. --- Definition of caregiver --- p.7 / Chapter 2.2. --- Global view of caregivers --- p.7 / Chapter 2.3. --- Care burden --- p.8 / Chapter 2.3.1. --- Introduction of Care burden --- p.8 / Chapter 2.3.2. --- The measurements of care burden --- p.9 / Chapter 2.3.3. --- Social determinants of care burden --- p.12 / Chapter 2.3.4. --- The impacts of caregiving on caregivers’ physical and psychological health --- p.18 / Chapter 2.4. --- Interventions for caregivers --- p.20 / Chapter 2.4.1. --- Psychosocial interventions --- p.21 / Chapter 2.4.2. --- Support and information --- p.21 / Chapter 2.4.3. --- Respite care --- p.21 / Chapter 2.4.4. --- Technology-based interventions --- p.22 / Chapter Chapter 3 --- Rationales of the study --- p.23 / Chapter 3.1 --- What’s mindfulness? --- p.23 / Chapter 3.2. --- How is mindfulness applied? --- p.24 / Chapter 3.2.1. --- Mindfulness-based stress reduction (MBSR) --- p.24 / Chapter 3.2.2. --- Mindfulness-based cognitive therapy (MBCT) --- p.25 / Chapter 3.2.3. --- Dialectical behavior therapy (DBT) --- p.25 / Chapter 3.2.4. --- Acceptance and commitment therapy (ACT) --- p.26 / Chapter 3.3. --- Reviews on the effectiveness of MBSR --- p.27 / Chapter 3.4. --- The use of MBSR among caregivers --- p.29 / Chapter 3.5. --- Limitations of current studies --- p.31 / Chapter 3.6. --- Why in Hong Kong? --- p.31 / Chapter Chapter 4 --- Validation of a Chinese Version of the Five Facet Mindfulness Questionnaire for Adults in Hong Kong, and Development of a Short Form --- p.33 / Chapter 4.1. --- Background --- p.33 / Chapter 4.2. --- Methods --- p.35 / Chapter 4.2.1. --- Preparation of Chinese version of FFMQ --- p.35 / Chapter 4.2.2. --- Participants and procedure --- p.35 / Chapter 4.2.3. --- Measures --- p.36 / Chapter 4.2.4. --- Data analysis --- p.38 / Chapter 4.3. --- Results --- p.40 / Chapter 4.3.1. --- Reliability --- p.41 / Chapter 4.3.2. --- Validity --- p.42 / Chapter 4.3.3. --- Cross-validation --- p.45 / Chapter 4.3.4. --- Confirmatory factor analysis --- p.46 / Chapter 4.3.5. --- Development of short version of FFMQ (FFMQ-SF) --- p.46 / Chapter 4.3.6. --- Evaluation of the FFMQ-SF --- p.47 / Chapter 4.4. --- Discussion --- p.50 / Chapter 4.5. --- Limitations --- p.53 / Chapter 4.6. --- Conclusions --- p.54 / Chapter Chapter 5 --- A Randomized Control Trial of MBSR among Family Caregivers - Subjects and Methods --- p.55 / Chapter 5.1. --- Study design --- p.55 / Chapter 5.2. --- Recruitment --- p.55 / Chapter 5.3. --- Retention --- p.56 / Chapter 5.4. --- Inclusion criteria and exclusion criteria --- p.57 / Chapter 5.5. --- Randomization, concealment and blinding --- p.58 / Chapter 5.6. --- Intervention group --- p.58 / Chapter 5.7. --- Instructors --- p.60 / Chapter 5.8. --- Settings --- p.61 / Chapter 5.9. --- Control group --- p.61 / Chapter 5.10. --- Outcomes and measures --- p.61 / Chapter 5.10.1. --- Primary outcome (depression) measure --- p.61 / Chapter 5.10.2. --- Secondary outcome measures --- p.62 / Chapter 5.10.3. --- Other measures --- p.65 / Chapter 5.11. --- Sample size calculation --- p.65 / Chapter 5.12. --- Statistical analyses --- p.66 / Chapter 5.12.1. --- Baseline comparison --- p.66 / Chapter 5.12.2. --- Effectiveness of MBSR --- p.66 / Chapter 5.12.3. --- Correlations among the changes of variables --- p.67 / Chapter 5.12.4. --- Medical services utilization --- p.67 / Chapter 5.12.5. --- Sensitivity analyses --- p.68 / Chapter Chapter 6 --- A Randomized Control Trial of MBSR among Family Caregivers - Results --- p.69 / Chapter 6.1. --- Recruitment and study flow --- p.69 / Chapter 6.2. --- Baseline characteristics --- p.69 / Chapter 6.3. --- Attrition and compliance --- p.74 / Chapter 6.4. --- Analyses of primary outcome - depressive symptoms --- p.75 / Chapter 6.5. --- Analyses of secondary outcome measures --- p.80 / Chapter 6.5.1. --- Anxiety --- p.80 / Chapter 6.5.2. --- Caregiver self-efficacy --- p.81 / Chapter 6.5.3. --- Mindfulness --- p.82 / Chapter 6.5.4. --- Other secondary outcome measures --- p.83 / Chapter 6.6. --- Correlations of changing scores between mindfulness and other outcomes --- p.83 / Chapter 6.7. --- Correlations of change scores between CESD and other outcomes (not including FFMQ) --- p.86 / Chapter 6.8. --- Analyses of medical services utilization --- p.87 / Chapter 6.9. --- Adverse effects of MBSR --- p.88 / Chapter 6.10. --- Per protocol analyses --- p.89 / Chapter Chapter 7 --- A Randomized Control Trial of MBSR among Family Caregivers - Discussion --- p.90 / Chapter 7.1 --- Discussion --- p.90 / Chapter 7.1.1. --- Effects of MBSR on depression --- p.90 / Chapter 7.1.2. --- Effects of MBSR on anxiety --- p.91 / Chapter 7.1.3. --- Effects of MBSR on mindfulness measured by Five Facet Mindfulness Questionnaire --- p.92 / Chapter 7.1.4. --- Effects of MBSR on caregiver self-efficacy --- p.92 / Chapter 7.1.5. --- Attrition and compliance --- p.93 / Chapter 7.1.6. --- Relationship between practice time and mindfulness --- p.93 / Chapter 7.1.7. --- Relationship between mindfulness and other psychological outcomes --- p.94 / Chapter 7.1.8. --- Effects of MBSR on perceived stress and health related quality of life --- p.95 / Chapter 7.1.9. --- Effects of MBSR on medical service utilization --- p.96 / Chapter 7.1.10. --- Self-rated effectiveness and acceptability --- p.96 / Chapter 7.1.11. --- Adverse effects of MBSR --- p.96 / Chapter 7.2. --- Strengths --- p.97 / Chapter 7.3. --- Limitations --- p.97 / Chapter 7.4. --- Implications and recommendations for further study --- p.98 / Chapter 7.5. --- Conclusions --- p.99 / Reference --- p.102

The purpose of this study was to generate a grounded theory explaining the social and psychological processes used by spouses during the waiting period prior to heart transplantation. Theory discovery was accomplished using the grounded theory methodology. Life on Hold was identified as the basic social psychological process generated from the data that explains the responses of spouses during the waiting period prior to heart transplantation. Life on Hold is the process of "tabling" life's activities for an indefinite period of time in order to devote one's life to another person(s) or event. Spouses of heart transplant candidates set aside life's activities and focus all thoughts, actions, and energy on maintaining the life of the candidate until a donor heart is obtained. The process consists of two stages: Freeing Self and Making Life the Transplant. The theory provides a basis for the development of relevant interventions to assist family members to cope with the uncertainty and stress of the transplant experience.

Este trabalho investigou o impacto da doença na vida do cuidador familiar do paciente crônico de um hospital terciário em São Paulo. 99 cuidadores responderam a um questionário sobre o impacto da doença crônica em seus sentimentos e em sua rotina diária. Foram testadas associações entre as variáveis dependentes (Questionário: Impacto da Doença Crônica) e variáveis independentes (dados do Questionário Sócio-demográfico). O perfil destes cuidadores é de predomínio de filhos (57,6%) ou cônjuges (31,3%), do sexo feminino (74,7%), faixa etária até 53 anos (69,7%), nível superior (43,4%), casados (58,6%) e procedentes da região sudeste do país (63,6%). A melhor resposta adaptativa ao impacto da doença crônica foi nos indivíduos procedentes da região nordeste do Brasil e a pior, nos cuidadores procedentes da região sul. A análise fatorial proporcionou redução de 38% do questionário e composição de 6 domínios, com consistência interna acima de 0,6. Concluímos que a doença crônica exerce sofrimento para os cuidadores, afetando sua qualidade de vida, fato geralmente negligenciado e por vezes, demanda tratamento por profissionais da saúde. Este estudo resultou na elaboração de ferramenta de investigação do impacto da doença crônica em cuidadores. / We aimed to investigate the impact of chronic disease on the caregivers of outpatients from a tertiary hospital from San Paulo, Brazil. A group of 99 relative caregivers answered a questionnaire focusing the impact of chronic disease in their lives. The association between dependent and independent variables (Questionário: Impacto da Doença Crônica and social demographic data, respectively) were evaluated by the qui-square test. The results show that the caregiver profile of this population is predominantly women, married, age over 53 years old, wife or daughter. The caregivers from the Northeast region of Brazil presented the best adaptive response to the impact of the disease while the worst one was from those from the South region. The factor analysis enables the composition of 6 domains, reduction of 38% of the questionnaire with internal consistency above 0,6. We concluded that chronic disease brings discomfort and pain to caregivers, affecting the quality of life. This study also resulted in a consistent tool to evaluate and diagnose the caregivers feelings. These feelings are usually neglected and underestimated and need attention and sometimes specific treatment by health professionals.

Este trabalho investigou o impacto da doença na vida do cuidador familiar do paciente crônico de um hospital terciário em São Paulo. 99 cuidadores responderam a um questionário sobre o impacto da doença crônica em seus sentimentos e em sua rotina diária. Foram testadas associações entre as variáveis dependentes (Questionário: Impacto da Doença Crônica) e variáveis independentes (dados do Questionário Sócio-demográfico). O perfil destes cuidadores é de predomínio de filhos (57,6%) ou cônjuges (31,3%), do sexo feminino (74,7%), faixa etária até 53 anos (69,7%), nível superior (43,4%), casados (58,6%) e procedentes da região sudeste do país (63,6%). A melhor resposta adaptativa ao impacto da doença crônica foi nos indivíduos procedentes da região nordeste do Brasil e a pior, nos cuidadores procedentes da região sul. A análise fatorial proporcionou redução de 38% do questionário e composição de 6 domínios, com consistência interna acima de 0,6. Concluímos que a doença crônica exerce sofrimento para os cuidadores, afetando sua qualidade de vida, fato geralmente negligenciado e por vezes, demanda tratamento por profissionais da saúde. Este estudo resultou na elaboração de ferramenta de investigação do impacto da doença crônica em cuidadores. / We aimed to investigate the impact of chronic disease on the caregivers of outpatients from a tertiary hospital from San Paulo, Brazil. A group of 99 relative caregivers answered a questionnaire focusing the impact of chronic disease in their lives. The association between dependent and independent variables (Questionário: Impacto da Doença Crônica and social demographic data, respectively) were evaluated by the qui-square test. The results show that the caregiver profile of this population is predominantly women, married, age over 53 years old, wife or daughter. The caregivers from the Northeast region of Brazil presented the best adaptive response to the impact of the disease while the worst one was from those from the South region. The factor analysis enables the composition of 6 domains, reduction of 38% of the questionnaire with internal consistency above 0,6. We concluded that chronic disease brings discomfort and pain to caregivers, affecting the quality of life. This study also resulted in a consistent tool to evaluate and diagnose the caregivers feelings. These feelings are usually neglected and underestimated and need attention and sometimes specific treatment by health professionals.